Having had virtually all the symptoms for APS and with nightly injections of Heparin relieving the symptoms you would have thought that I would have been diagnosed with APS by the experts! But no. My anti-cardiolipin test came back at 35 which is 31 over the limit for a positive, however because this was done at my local hospital it was not acceptable for the experts. I see that the test has now been changed anyway. Having had no positive for APS my haematologist was trying to remove the one medication that relieved the symptoms and obviously was working.

My GP realised that I almost certainly had APS and told me so but he was leaving the practice one week later so the only sensible doctor was moving to Canada from the UK where I live.

With my life under threat having had a heart attack earlier in that year I decided I must do something myself I thought “the bottom line is the buck stops with me as far as my health is concerned”

I come from a highly technical background so medical jargon is easy for me.

The technical jargon I was used to was much more advanced anyway.

I have been using the Internet from the 70s so I have a head start on most non tech people.

I researched the subject for six months solidly. I was spurred on by the docs trying to remove my Heparin lifeline 3 days before Christmas.

My wife has secondary progressive MS and I am her carer so life is not easy.

I even phoned the police to find out if they could really remove my lifeline and let me die and the police said it was up to my doctors if I died or not. Great! When the chips are down it is surprising what you find out. I wrote a letter to the chief executive of my health trust and got an immediate u turn in a phone call being told of course I could continue with my medication.

I decided I needed to be independent.

By chance I had ordered a product containing serrapeptase and nattokinase to treat my Peyronie's which had been triggered to maximum damage by the Bisoprolol beta blockers they had given me (Peyronie's is a listed side effect of bisoprolol if you look it up on the internet but conveniently for the manufacturers not on the piece of paper included with the pills)

I read on the pot that the product must not be taken with either heparin or warfarin. This turned out to be because the product was a blood thinner in its own right.

I took a gamble and swapped from heparin to the serrapeptase and nattokinase.

"Bingo" it worked and I could tell it worked better than heparin because I was in the habit of measuring my blood sugar every day thinking previously I had diabetes and in pricking my finger I could tell that the blood was a much brighter red and flowed more freely.

I was not symptom free but this treatment was much better than the heparin.

I was taking 9 capsules a day which was costing me 80 pounds a month but anyone who knows me would know that I do not spend money lightly. I save money at every available opportunity. Being threatened with death was a good reason to spend this kind of money. There are other products on the market and I could let anyone who wants to know what these are.

I still get zig zags, occasional sinus problems for a day, occasional dizziness, the odd whistle in the ears and erratic heart rate sometimes and cold legs.

However I now live a very normal life with little discomfort.

I can play golf three times a week and yes I do get a bit puffed out sometimes but the treatment I am on makes exercise possible.

Since my heart attack I have to take it steady and do have a few dodgy moments but I hit the ball a very long way for my age.

Before if I exercised I would only get worse and end up in the hospital with erratic heart problems and my legs were sore and breaking out in veins and burst blood vessels.

My Chronic Fatigue has gone completely from the moment I started my treatment as has my sore hip and knee and chronic ear problems and strangely so has my hiatus hernia. The Glucosamine and cod liver oil seem to have relieved my very stiff and chronic back problems as well as relieving my swollen knuckle joints.

This is what I now take having scaled back the treatment after 20 months.

17 Replies

I think its wonderful that you have found something that seems to work for you however, I am a little concerned that you do not mention any liaison with any medical professional regarding taking this new medication.

Ofcourse its up to any one of us how we decide to live or find out what works best for each of us but I think I would raise caution to anyone reading this to research like Sporty thoroughly and consult with your Doctors who manage your conditions.

Sporty you do not mention whether this product is from the Holistic Herbal Remedy side or in fact a drug.

Have just had a look at it and it is for sale in America, which leads me to wonder whether this is licensed here in the UK.

Its a massive gamble doing such things and I for one would not proceed without full discussion and backing of my consultant, but glad it seems to be working for Sporty.

Annie I also agree with your comments. There is also the placebo effect. There are many double blind studies that have proved that this can have just as strong an impact as many medications.

What worries me the most about your situation is your self confessed admission of still having zig zags, occasional sinus problems for a day, occasional dizziness, the odd whistle in the ears and erratic heart rate sometimes and cold legs. One of the first symptoms that went away when I was put on a trial of heparin was the cold hands, legs and feet, presumably indicating better circulation. I have also stopped having tinnitus symptoms which you still describe.

Anyone with a serious and life threatening condition has a responsibility to use medications/herbal remedies in conjunction/agreement with their medical advisors. If your present doctors dont agree with what you are doing then you need to find one that does and work with them because someone has to know what is going on. The reason is simply that either you reject conventional medical advice, go your own way but when things go wrong expect the NHS to pick up the pieces at great cost to the rest of us or you work with someone so that they can stop you doing something that may help you in the short term but be disastrous in the long. If they understand you well enough and you have a good relationship you should be able to come to some understanding about a suitable pharmaceutical regime that will suit you both.

Sometimes a little bit of knowledge is not a good thing. I understand your need to improve your health but there are better ways of doing it and you also have responsibilities to your wife. I am sorry if I have sounded harsh but I do not agree with self prescribing with such a dangerous condition - working or not, you have too much to lose - your life!

Oh my goodness I woudn't do it, I am not sure where you live but you seem to be spending an awful lot of money and maybe risking your health.

I had a heart attack, which really saved my life as I was put on Clexane and then Warfarin

instead of spending that amount of money why don't you see the boss professor Hughes if any one should know he should or get refered to St Thomas's. They might even use it in research etc and then it may help us all

If you don't live in this country pehaps you could take it as a holiday.

I am not sure how you stand in the way of insurance should the worse happen

please be careful

love Karen xx

5 years agoHidden

It is not a placebo effect you cannot possibly cancel out the effects of Hughes Syndrome with placebos. Nice if you could but unfortunately no way.

I have very close association with the medical profession though my family and circle of friends so I have a lot of experience to draw on.

I have done a lot of research into this and my treatment is based on science. I will post more later.

I am sorry to say that most of the consultants and doctors I have seen are to put it politely "Chocolate Teapots", Steeped in knowledge passed on from 100 years ago by word of mouth. I have had many days in hospital as a result of this horrible disease and I can tell you that most of the doctors I met could not diagnose for toffee. Most doctors had very childish thinking.

They take a leaf out of the Wizard of OZ`s book and I think any doctor reading this will know exactly what I mean.

The medications prescribed by the medical profession are based on "breaking" natural systems in the body. Warfarin does that too. It breaks the recycling process of vitamin K in two places (not good) and it is very hard to control because it can take 5 days or so for the effects of changes in dose to take effect. Variations in diet can cause the INR to vary wildly and with such a long delay it is very hard to remember what was eaten to cause the adverse effect.

Thank you Karen for your comment about insurance but that is not relevant when my life is at stake. Insurance does not keep me alive.

I have got my life back.

I am able to care for my wife who has serious medical complications which take up most of our time.

Previously my wife would comment that she wondered who was the most disabled her or me.

After doing an hour of chores I would have to lie down for three hours before I had recovered enough to do some more.

Being alive and able to function without extreme discomfort and without the terrible debilitating fatigue and other symptoms like bowel cramps, constant whistling in the ears, ear infections, severe balance problems, sinus pain, muscle tearing, body stiffness, debilitating back pain, and heart problems is marvellous.

I took a risk in trusting myself and it was the best thing I have ever done in my life.

I will be posting more details about what I believe is likely to be happening with people who have Hughes Syndrome.

I really appreciate the work by Dr Hughes in pinpointing this nasty disease and making it diagnosable in some cases.

However it is only a syndrome and so it is very likely that there are many pathogens and causes for this to occur.

It is probably not caused by one infection and the causes may be different from patient to patient. I suspect that some of the causes may be familial and some genetic and others caused by known pathogens or a combination of all three.

I think you will find that as time goes by you will all find out that the causes are not what you might think.

5 years agoHidden

I would love to see your scientific evidence on all of this as you say that you have.

You need to remember that there are patients on here, sick and well patients. Not everyone has the same symptoms and problems with this. We can even go into a remission and flares of sorts.

What you say works for you may not work for others and very well could harm them.....

I must agree with the other comments on this post - what may seem to be working for you, may not work for other people and could be dangerous.

Your hypotheses about the causes and triggers of Hughes syndrome are very interesting and are certainly being explored by different research groups. It may be in the future that patients are treated differently according to which aPL test(s) they are positive for and the symptoms they display.

Also your observations about warfarin are very correct in that it does affect the clotting process, is disturbed by nearly every environmental factor and makes it difficult to control the INR. However, it is currently the safest medication on the market and helps an awful lot of people.

The new oral anticoagulants are addressing the problems faced by people taking warfarin by acting in a completely different way - such as Xa inhibitors like Dabigatran. These have not yet been trialled for Hughes so will not be used to treat it yet but, hopefully, will be able to in the future. Naturally, it will never be tested in pregnancy (unless by accident) so pregnant women are still going to have to put up with the heparin injections.

Even more radical is the new approach to treatment being developed by UCL - here the idea is to design drugs that target the antiphospholipid antibodies specifically. Those drugs could stop the antibodies from affecting clotting but would leave ordinary clotting in response to injury or bleeding unaffected. However, before such drugs can be designed, we have to know more about the aPL.

One of our charity's medical advisers has written an excellent article which is due out in our next newsletter about DOMAIN1 - perhaps you've heard of it?

I do believe that everyone is entitled to their opinion and am glad your regime is working for you, but would ask anyone reading it to bear in mind this is not medically approved of and you, as yet, are the only person following this regime.

Dear Sporty, again I have to agree with all the above comments that other members have made and although I am really pleased and glad that your 'regime' is working for you it sounds expensive and not proven to help symptoms other than maybe for yourself. As other members have stated, this regime will not be for everyone and in some cases could give false hope to other patients who are newly diagnosed and therefore very vulnerable.

QUOTE "Having had virtually all the symptoms for APS and with nightly injections of Heparin relieving the symptoms you would have thought that I would have been diagnosed with APS by the experts! But no. My anti-cardiolipin test came back at 35 which is 31 over the limit for a positive, however because this was done at my local hospital it was not acceptable for the experts." END OF QUOTE

"Laboratory Criteria for Hughes/APS: (3)

Anti-cardiolipin IgG and/or IgM measured by standardized, non-cofactor dependent ELISA on 2 or more occasions, not less than 12 weeks apart; medium or high titre (i.e., > 40 GPL or MPL, or > the 99th percentile)

and/orAnti-ß2 glycoprotein I IgG and/or IgM measured by standardized ELISA on 2 or more occasions, not less than 12 weeks apart; medium or high titre (> the 99th percentile) and/or

Lupus anticoagulant detected on 2 occasions not less than 12 weeks apart according to the guidelines of the International Society of Thrombosis and Hemostasis."

Your titre for the anticardiolipin test came back at 35 and as you can see from the exert above en.wikipedia.org/wiki/Antip... both above aCL test /912 weeks apart the standardised titre for a medium or high titre is <40. You also should of has a blood test to see if you are positive for the Lupus Anticoagulant (the name is a misnomer and nothing to do with SLE Lupus). You can be positive for either of them or in some cases positive for both tests so it would be worth finding out if you’ve had all the relevant blood tests. You are right in saying it is a fight for our life but the most important thing is to be correctly diagnosed and to have the correct treatment plan.

It looks like you live in or not far from Essex and there are lots of patients from that area who have asked for a second opinion and a referral to The Louise Coote Lupus Unit, St Thomas' Hospital......for a diagnosis of Primary APS where there is no other underlying autoimmune disease Prof Hunt the consultant Haematologist is the APS expert. If you haven't already been referred there then ask for one. You can also see Prof Hughes privately at the London Lupus centre londonlupuscentre.co.uk/hug... but be aware our APS experts will not condone the use of unapproved over the counter medications once you have been thoroughly retested and diagnosed.

I'm so sorry to hear your wife has secondary progressive MS I was originally mis-diagnosed with MS and paralysed from the neck down in 2000 and it wasn't until January 2002 that I went for a second opinion to see a consultant at St Thomas' that I was given my life back........hopes and dreams can come true. I also suffered a stroke and have been lucky enough to see the right consultants and fight to get the correct treatment.

Sorry had to have a little giggle but not really sure what you expected the police to do about being taken off heparin however we all do the strangest things when frightened and pushed into a corner.

So sorry to hear that you suffer with Peyronie's disease although it does seem to be quite common - it's thought to affect about one in 100 men - few have heard of it and I have spoken to over a 1000 patients male and female and probably personally met a couple of hundred and never heard that this disease is remotely linked to Hughes Syndrome. Currently unproven treatments include Vitamin E tablets, Para-aminobenzoate tablets and Injections of chemical agents such as collagenase, dimethyl sulfoxide, steroids and calcium channel blockers directly into the plaques (the most promising being collagenase, an enzyme that attacks collagen, the major component of Peyronie's plaques). I am so sorry to read that the Bisoprolol beta blockers they had given you caused a horrible side effect. As long as the serrapeptase and nattokinase to treat your Peyronie's works and also thins your blood it is your decision to try anything that might work for you.

Such a shame that you still have zig zag vision, occasional sinus problems and dizziness with the odd whistle in your ears have you ever investigated Ménière's disease as some of your symptoms sound like a mild form of Ménière's?

Brilliant news that you can live a very normal life even with the occasional erratic heart rate and cold legs but please be careful as I also had a few years of “remission" and was able to join a gym and exercise and take part in doing voluntary work until this spring. My medication has really worked for me unfortunately autoimmune diseases wax and wane and your antibodies go up and down and what works for a while and lead you to believe you are ’getting better’ when in reality it is only remission and symptoms can come back without warning and slap you in the face like they have with me. Please seek a second opinion for your APS as you’ve already has a heart attack you should be in my humble and non medical opinion be taking Warfarin. Thank you for sharing your story with us and I hope you will take the time to read my answer.

Thanks for your comments. As for tests, anyone in the medical profession will tell you that they don't count for much. In many cases a person’s age is a better test for some diseases. There are already new tests for APS because the old ones produced too many false negatives.

By looking at lifetime symptoms it is far more likely that a correct diagnosis is made. Unfortunately many doctors become confused by more than 3 symptoms. In the real world of diagnosis in industry and in criminal detective work there may be anywhere between 1 and 100 clues to help with diagnosis.

The more clues the better. Symptoms are clues and tests are clues but are unreliable. The problem as I see it is that doctors are not generally technical people. Technical people are not fazed by information they soak up information like a sponge and the more the better. Doctors appear to hate information and as such this is why the correct diagnostic rate for GPs in the UK is very low. According to peer discussions less than 25 percent diseases are correctly diagnosed.

We are moving into a very technical world and Genetics will change medicine completely. If doctors are not happy with more than 3 symptoms then they will have a shock dealing with the technicalities of DNA which is actually computer code. Software engineers would be more suited to modern medicine.

We all like to live in the past but it’s gone and there is no going back.

I like to live.

I have just played are very good round of golf this afternoon and I feel great.

I have informed you of what I am doing about it and there is a reply from a physician which you may have missed on another thread backing up my reason to question whether APS is actually Osteoarthritis. A contentious question but only a question non the less.

I am trying to help bring about sensible meaningful discussions to help further research into the real causes of this disease.

I think Hazel and Kate have said all i was going to say! But just to repeat this is not an approved medical treatment so i would stronly advise people from following unless they see medical advice first.

paddy

5 years agoHidden

Hey there, I happen to be in the medical profession and be an APS patient and I don't discount ANY of the tests at all!

I believe the new tests you are talking of are not new at all, but rather new standards for the tests themselves. When APS was identified back in 1980s it is my understanding that the tests for such antibodies were not patented so that they would be more readily available and at a lesser cost. The researchers were interested in diagnosis and treatment, not money. Sadly, as such was done for us, it also failed to create a standard for the tests themselves and some are far less superior than others, and in such being much less accurate as you describe.

One of the issues then and now is the inaccuracy of some of these tests and incongruency of the tests available. There has been an international coalition of sorts that is not only bringing together scientists, doctors and researchers from all over the world, but also bringing together the patients worldwide. What does this mean and how does this translate to us patients? It means more answers hopefully and larger clinical trials.

In doing so, they have begun to work together on an unprecedented level to come up with answers and keys to the puzzle of APS. They have identified some of the issues and the key things that need to be worked on. One is this testing incongruency. This is just ONE of the items they are working on...for us, the patients.

I have to say I trust the experts (professors, doctors, and researchers) with my life. I have to. I have faith as well. They do think of us, they do worry, and they do want a cure. I have seen it firsthand. They do care, too. They are working hard on this.

I can also promise you that they read this here and are interested in the quality of our lives and aim to improve it the best they can. That is why they are working so hard internationally.

Now if we only had an unlimited supply of funding to support some more research and collaboration!!

5 years agoHidden

Oh I forgot to put this link in above post. It lists guidelines for testing... Check out the algorhythm tab, it lists other not as common tests!

If I stop the treatment my symptoms return within a couple of days so I am not in remission. The side effects of most medicines are not without serious risks hence why I avoid taking man made molecules wherever possible. I always do a lot of research on the internet to see if there are negative comments about any treatment before taking it and I would certainly be wary of taking Plaquenil (hydroxychloroquine) due not least to risk of blindness. I have not found any negative comments about any of the treatments I use.

I will let others try Plaquenil for 30 years as guinea pigs before I use it.

I will probably not be around by then due to old age.

The threshold tests for APS would be like saying that a person with 10 spots has chicken pox but a person with 9 spots does not. I am sure that some people catch chicken pox and have no spots at all but they still have chicken pox!

The reliance on blood tests is a mistake until a 100 percent relable test can be found. APS is a syndrome after all and may well have many different causes. Until we know the cause(s) we will have very unreliable tests.

Thankyou for your comments and I hope like other health sites you will become more open to discussion.

If this site is only to console people with APS then it will be a shame.

I'm brand new here and glad to have found you. I was dxd. with APS in 2008 although have had symptoms (cognition, skin, miscarriage, ms-features, migraine, ad nauseam) for many years and also spent several years having numerous tia's and a (luckily) small stroke.

When was dxd. they also discovered that I have low factor VIII levels (mild hemophiliac) which meant I could not take wayfarin. My hematologist put me on heparin shots which, after 4 months, my body could no longer tolerate. He told me to get my will in order and left the room. When I asked for clarification he had his nurse assistant explain that there was nothing more which could be done for me.

Knowing that I had been having as many as 6 tia's monthly before, I didn't know where to turn. A friend gave me the number of a holistic medical practitioner friend of his out of state. I called him and he recommended I try nattokinase, but to make sure that it was pharmaceutical grade. I had nothing to lose.

I researched everything I could find on the internet; it was discovered by a Japanese medical researcher working at a major hospital in Chicago in 1980; he was looking for something which could successfully dissolve thrombus associated with cardiac and cerebral infarction (blood clots associated with heart attacks and stroke). Natto, a natural soy cheese, could. There are many sites I could reference here but as I am new I don't know as it is allowed so I will not as I wish to stay well within bounds. Bottom line, nattokinase decreases the ability of blood to clot. There have been small human studies but nothing big. I so wish large studies would be done, however it may be that the costs are prohibitive. A drug company has the means to sponsor such a test but unfortunately Nattokinase would not interest a drug company as there is not a profit market there. I mean nothing ill against the drug companies, but business is business and natto is a food which has already been marketed.

Anyway, I did get a new hematologist. When she saw my blood reports and found out I was on Nattokinase she agreed that, if she were me, she might take the same course I was taking. She wanted to be my doctor and see me at regular intervals. However, she told me right off that she would not be taking any blood tests. Because I was going an alternative route this placed her in an awkward position. Heck, this would not help me at all. I went to my wonderful internist who now checks my Fibrinogen levels (latest count was 336 with reference being 150-450). Oh, did I say that there are no side effects from nattokinase.

How have I been doing these last 4 years? I've had a few tia's, perhaps 2 a year. That may sound terrible to some of you but it's much better than the apx. 6 a month I was getting! I feel pretty good, still deal with problems, but then not as bad as before. Actually took myself on a 4 day vacation in '09 and again in '11; something hadn't been able to do in over a dozen years. I'm not dancing, but I'm singing - so that's not bad. Actually I feel pretty good!

Sometimes there's not an option. I'm not suggesting anyone go out and switch, no, but I did want to respond to the original post and perhaps add a bit of information. And I do apologize for the length of this. For someone who had no options, I am so eternally thankful for nattokinase.

Thanks for 'listening'

4 years agoHidden

I have been busy for a while, thanks Leigha, yes I had no alternative but how lucky I was to find out about Nattokinase and Serrapeptase. When your life is on the line you have to take responsibility for your own health. I found that out the hard way. All the comments above from people who probably have obviously never been in a life and death situation. My wife has MS and her NHS consultant's comments are that she is in good hands with me and I have a letter to prove it. So not only am I taking it but so is my wife and her consultant is aware and we have his blessing.

Another woman with MS is now taking this too and has benefited from it.

It is vital to take these enzymes at least 30 minutes before a meal with a glass of water and not to drink or eat anything hot which will destroy the enzymes.

I am now taking a very high dose of Serrapeptase (Serratiopeptidase), 178000 ius.

I think you will find that is a lot. And about 18000 fu's of Nattokinase, I may up the Nattokinase. I have been on Nattokinase and Serrapeptase for two and a half years.

These enzymes have had the most remarkable immediate and long term effects for me.

I have found that taking high doses of Omega 3 also helps a little

Having been tested in Scotland my wife was reccommended to take 2100 EPA and 60mg of DPA a day. The capsules supplied did not smell of fish due to being purified and concentrated. She would have to take half a bottle of normal off the shelf capsules to get to that level normally. The Universtiy of Sterling are involved with research into MS and veinous insufficiency.

I take a high dose too now. I suspect the benefits are long term for this and not really noticable from day to day like with the enzymes.

I am looking into CM (Cetyl Myristoleate) for my joints, a natural substance found in Coconut oil, Swiss Cheese, Beef Tallow and African Combo nuts. Apparently mice use this and are completely immune from joint problems. However where they find the African Combo Nuts is a Mystery.

My father never had any joint or heart problems but always used to eat a slice of bread with beef dripping on it every night for supper. He died 18 days after tripping down stairs and breaking his hip, wrist and collar bone at the age of 89 having smoked all of his adult life and having outlived all the doctors who advised him against his habits. He always walked 5 to 10 miles at a very brisk pace at least 3 times a week.